This is actually written by my sister Rachel Pastiloff Owings but I felt the need to share.
It is exactly one year ago today that my angel received his diagnosis of Prader Willi Syndrome. Prader Willi Syndrome is a rare genetic disorder effecting the 15th chromosome. It is a complicated disorder marked with a host of medical complications. The most notable being that my son would always be hungry, never having the ability to feel full. It doesn’t even seem real, but it mostly surely is.
Most would find it odd to celebrate such a day. If you asked me 365 days ago if I would celebrate today I would have laughed at you.
I stand here today a new woman. Today I celebrate.
When that call came in on Monday, September the 14th 2009 I thought my world had ended. I felt the bottom drop out, I collapsed to the ground and sobbed harder than I had ever before. I thought losing my father was the hardest thing in my life. You will never be prepared for the sadness that comes with your child having an incurable condition. The deepest part of your soul aches, your heart burns, the whole body goes numb. I thought I would never get up off of that floor. I thought I could just stay there and die.
I never held Blaise so close as I did that day, and amidst my sadness I made a promise to him. I promised him that I would be there to champion him, to support him, and to help find a cure. Through my tears I picked up the phone contacted PWSA , Prader-Willi Association, and was on my way.
By the end of day one I had found that two friends had loved ones with PWS ( the nickname for Prader-Willi) and by day two, I had spoken to both of them on the phone.
I was going to find the courage to go on even if it killed me. I would grieve but I would move forward. No matter what.
I spent the first two weeks crying. I am not sure what I was crying for. Lost dreams, his pain, or my fear of the future?
I guess I cried for it all. I couldn’t handle the thought of what our lives would be like, but, I moved on, I forged ahead. Blaise needed me to be strong and I wasn’t going to let him down.
The prognosis was so scary, truly the stuff of nightmares. I was petrified with fear. How was I going to handle all of this?
He was so far behind, how was I going to catch him up? I had to be superwoman.
He gave me the strength. His determination, his will, and most of all his smile, gave me all the courage I needed to go on.
So now it is a year later, and here we are. We have come so far. My son is my SUPERHERO. He is PHENOMENAL! This little man has already overcome so much in his short life. No matter what the day holds for him he wears a smile on his face. The love that he has in his heart is unmatched by anybody I have ever met.
We always think that we are here to teach our children about the world. I believe otherwise. My son has taught me more than I could ever imagine. I have learned patience, compassion, trust, and, unconditional love from Blaise.
Blaise has come so far in the last year, surpassing all of the expectations of all his doctors. If I knew one year ago today what life is like now I wouldn’t have been so sad. Yes, life can be challenging. Yes, I still cry (but no so often). I have learned to love life, love individuality, and most of all, I have learned to play the hand that was dealt to me. One year ago I asked: why me? why him? why us? I don’t ask those questions anymore.
I know we were chosen because we have work to do, and we certainly got busy doing it.
You may ask again why is it a celebration that he got his diagnosis? I will say this: one year ago today Blaise’s life began. The diagnosis has allowed my son to live the most amazing life and to grow beyond belief. The freedom of knowing the diagnosis allowed us to grow as a family. Blaise is a much healthier and happier soul knowing what he has to face, we are better parents for knowing how to provide for him. Blaise is my angel and to watch him blossom over the last year is nothing short of a miracle. Blaise is my miracle.
I love you Blaise!
Note from Jennifer Pastiloff, Rachel’s sister, who chose to publish this:
I think we can all learn from this. How many times in our lives do things happen that leave us feeling undone, lost and searching for meaning in a world which has come unravelled? I thought this article was an inspiration to us all. My sister chose to turn something that seemed like sadness personified into a celebration! It’s so easy for us to get caught up in our own dramas, our own voices and old repetitive tapes and we so ofetn forget that we have the power of choice. Choose celebration. I lead workshops that help you in this called “Manifestation Workshops”. Next one is in L.A Sep 25 and then Philadelphia Oct 23. I also give FREE yoga to children and adults with special needs. G.A.M.E. Yoga. Gifts And Miracles Everyday! Contact me if you have someone in your life who could use this. Namaste~
I also wanted you all to learn about Prader-Willi. In Blaise’s lifetime, I hope they find a cure.